“In our country we are not the priority,” Daisy Cruz says plainly.

She is surrounded by other women living with HIV who agree. They share stories that are not often told about the epidemic in Asia and the Pacific. In a region where men living with the virus outnumber women roughly two to one, the issues of women and girls are often overlooked. They are all members of the International Community of Women Living with HIV Asia Pacific (ICWAP).

Eva Dewa was diagnosed in Yogyakarta, Indonesia in 2017.

“I came home seeking a safe space to share my sadness. At that time, I believed that my partner would support me. Instead, he blamed me,” she says.

Ms Dewa has survived intimate partner abuse. She knows she isn’t alone: “A lot of women either experience violence and get infected with HIV, or contract HIV and experience violence.”

She gave birth to twins two years before her diagnosis. During her pregnancy she was never screened. Unaware, she went on to breastfeed for a couple years. When she learned her status, it was she rather than healthcare staff who suggested the children be tested. One child was HIV negative. The other wasn’t.

UNAIDS estimates that under two-thirds (64%) of women living with HIV in Asia Pacific receive treatment to prevent transmission to their babies. This is far lower than the global average of 84%. Ms Dewa reflects that while HIV services for pregnant women are expanding, smaller cities and rural areas benefit more slowly.

Cathy Ketepa understands the challenge of reaching remote districts. Every day in her native Papua New Guinea, five infants are born with HIV. The epidemic there has doubled since 2010 with new infections among women increasing by a staggering 67%.

“Only around half of mothers living with HIV receive antiretroviral therapy,” says Ms Katepa . “We must bridge this gap to protect the health and future of our children.”

But while the women advocate for expanded services to reduce vertical transmission, they are adamant that their dignity, privacy and agency must be respected. The International Community of Women living with HIV (ICW) has conducted a global analysis of the reproductive coercion, mistreatment and abuse experienced by women living with HIV. The study found that across regions, during pregnancy and infant feeding women were most subjected to force.

“There is an issue with coercive practices,” said Sophie Bryon, ICW’s Director of Global Programmes. “We are talking about women being told not to have children, not to have another child, to terminate and being pressured to undergo sterilization. There is still denial of contraception and pressure to use certain kinds of contraception. There are issues ranging from verbal abuse to physical violence.”

There is also stigma. When Ms Cruz went to the hospital in Manila to give birth in 2001, a nurse on the ward loudly asked why she wasn’t breastfeeding.

“All the patients looked at me like there is something different,” she said.

There is a sense from these women that they’ve been ambushed by a threat they didn’t know existed. But having been hit, they will speak up for themselves, and for others.

Christina Montoya didn’t think it was possible for a woman like her to be infected. She was married and only had sex with her husband.

“We must be informed!” she declared. “And all our friends must be informed!”

 11 years of ICWAP 

ICWAP builds the capacity of women and girls living with HIV and women-led organizations in 18 Asia Pacific countries. It provides coaching and mentoring, ensuring women participate in Global Fund processes and are meaningfully engaged in community-led monitoring.

The organization was formed in 2014 to tackle the human rights violations and violence women living with HIV in the region experience, while removing barriers to treatment and care. Sita Shahi, its Regional Coordinator explains that the challenges can’t be tackled from a health angle alone.

“Women face a lot of stigma and discrimination. They also have an economic burden and are responsible for rearing children. There are so many intersecting issues,” she explained.

Now there are new challenges. ICWAP conducted an eleven-country survey on the impact of the United States development aid stop work order. It found that some country networks have either collapsed or scaled back, leaving women without crucial resources, including information about their rights and how to address gender-based violence or discrimination. There is also reduced access for many women who depended on community-based services for HIV or sexual and reproductive healthcare. While treatment is provided by government in most countries, many of the shuttered peer-led services were more accessible and friendly.

Some women who worked for US-supported programmes have lost their jobs, resulting in financial stress. ICWAP itself has been hard hit.

“We lost all funding. The core support we were receiving for managing staff and country interventions is gone. It is a devastating situation for us. There is now no funding to support our sisterhood at country level,” Ms Shahi explained.

UNAIDS has called for countries in Asia Pacific to support community-led HIV work including stigma and discrimination, adherence counselling, social support, monitoring and advocacy.